One
of the themes at this week'sInternational
AIDS Conference in Melbourne, is the testing
and treatment of children. In Zimbabwe as elsewhere there are high numbers of
children growing up with HIV who have not been diagnosed and in whom the
disease is therefore advancing without check. A recently published study in
Zimbabwe by the London School of Tropical Hygiene and Medicine sought to
investigate why this is and how to overcome it. It concludes, “The HIV
prevalence among children tested was high, highlighting the need for
provider-initiated HIV testing and counselling (PITC). For PITC to be
successfully implemented, clear legislation about consent and guardianship
needs to be developed and structural issues addressed. Healthcare workers
(HCWs) require training on counselling children and guardians, particularly
male guardians, who are less likely to engage with health care services.
Increased awareness of the risk of HIV infection in asymptomatic older children
is needed.”

This study recommends
training healthcare workers to counsel others. However, the study omitted to
consider the key issue of attitudes held by health workers, lawmakers, and
other professionals towards HIV and those with HIV. Unless healthworkers are
offered this critical first step of training in self-awareness, to assess their
own attitudes towards HIV, and therefore people with HIV, any amount of
training to counsel others will be money wasted. High levels of stigma present a huge
barrier across the whole spectrum of professional service providers
in the field of HIV and AIDS. When will policy makers, politicians and
academics start to think upstream, in order to change their own and their
employees’ attitudes towards HIV before seeking to change the attitudes of
others?

Stigma and discrimination are also experienced widely
by many people living with HIV, particularly women and their children - in homes,
communities, health-care settings, the legislative justice system and social
services. This stigma is often started, and reinforced, by those who are meant
to be their professional carers.

One HIV positive woman
reported having been told by a healthworker, “The best thing you can do now for
yourself and unborn child is to terminate the pregnancy. How would you feel
when the child is born, and you have to watch her deteriorate and die after so
much suffering. The likelihood of your child being born HIV negative is
nil.” The woman refused to terminate,
and today her child is nearly a teenager, HIV negative, and healthy.

Another woman, after missing
a scheduled hospital visit due to transport issues, was told, “You decided to
go on and enjoy sex and have a baby while you knew you are HIV positive, and
therefore it is entirely your fault for infecting the child, and failing to
meet appointments – we will attend to you last.”

The attitudes of service
providers, and people living with HIV, are both light years apart from where
the facts now reside. Extensive scientific research, partly conducted in
Zimbabwe, now shows that use of a condom during a sexual encounter, especially
if the person with HIV is taking antiretroviral medication and thus able to maintain
an undetectable viral load, makes transmission of HIV to someone else highly unlikely.

The problem is not just with
health service providers however. The law and attitudes of lawyers also lag
behind science. For services to be particularly responsive to the needs of
people living with HIV, legislation and legal policies also need to be revised
in line with the scientific evidence that is rapidly emerging from ongoing
research. Even though HIV transmission in the above circumstances is now known
to be highly unlikely, the Zimbabwe legislation still treats all HIV as highly
contagious. For example, the Criminal Law Codification and Reform Act 23/2004,
states “(2) For the purposes of this section—(a) the presence in a person’s
body of HIV antibodies or antigens, detected through an appropriate test, shall
be prima facie proof that the person concerned is infected with HIV”. There has
been no revision to this law to reflect the significant
advances in scientific knowledge, so this statement is used to support the
continued erroneous belief that all people with HIV having sex are likely to
transmit HIV; and it upholds the views that they should be criminalised.

HIV-related stigma has remained high in Southern Africa in
general, and across the whole of the sub-continent. While there have been many
advances made in knowledge and management of HIV, such that neither in sexual
intercourse nor in childbirth
should there any longer be a threat of transmission, many still continue to
acquire HIV through lack of ability to negotiate condom use, or lack of access
to ARVs when needed, and they continue to bear the brunt of the epidemic.

The burdens faced by women in relation to HIV have often
been cited.
These burdens feel so big that any woman who has responsibility for caring for
a child understandably feels she is protecting the minor by refusing to have
her/him tested
for HIV, or by refusing to disclose the child’s HIV positive status, even to
the child concerned. A caring healthcare worker may also feel like this if a
minor approaches them seeking to be tested for HIV.

The many discussions taking place amongst HIV programme
implementers on “when to disclose to a
child” are troubling. The argument many have put forward is that the child may be too young to understand,
or too immature to be able to handle the 'burden' of knowledge of their HIV
status, or a parent or guardian’s status. The fact is that having HIV is still
not discussed because it still bears an element of taboo. Despite the many
advances in research that have shown that HIV is not a contagious disease that
can be spread by casual contact, it seems that much of society has remained
stuck in the mode when not much was known about HIV, and there was no
treatment. It is also considered safer not to know one’s status than to know it
and run the risk of being accused of knowingly “putting someone else at risk”.

Surely therefore what decision-makers should be asking,
instead of “when to disclose to a child?” is “how to overcome the stigmatising
attitudes we as healthproviders and law-makers hold and convey?”

If HIV is
talked about as part of normal conversations in the home and in the school, and
not as a "contagious disease", then the issue of when to disclose
falls away. When I tested HIV-positive, I immediately disclosed to my brothers
and sisters and their children. It became part of normal conversations, and
when it came to the time when my baby started asking questions about my
condition, it was easy for me to disclose my status to her. While she was
tested at 18 months, when she turned seven she insisted on getting tested - it
was something easy to do, and gave her reassurance as to her status.

As counsellors, we are all taught that “change starts from
within each and every one of us: without changing ourselves we can’t change
others”. Yet this is not a concept that is familiar to other service providers
or to law-makers.

We need to rethink how we change the landscape in relation
to HIV, so that lawyers and health providers alike actually believe in and act
on the science themselves, rather than continuing to behave as if HIV was a
highly contagious condition whose carriers should be shunned and punished. Researchers working in the field of HIV
would be wise to make a direct intervention to challenge and change the
attitudes and practices of the health
systems at national, regional, and international levels, on the results of
emerging scientific research and the implications.

And what about our
children? Unless we all take steps to change our own attitudes and those of our
healthworkers and lawyers, our children will continue to acquire HIV at birth,
and will continue to grow up uninformed, untested and untreated. They will also
become criminalised as they begin to have their own sexual relations when
older. And they will get sick and die. Unless we act now to perform a u-turn in
attitudes and practices, this legacy of shame and blame will continue and will
be the heritage that we, women and men alike, bequeath our children. And that
will be a disaster for us all.

I am one of the many
women with HIV who are not attending the conference this week, owing to lack of
funds. However I very much hope that the issues I have raised here will be
addressed.

This article is part of 50.50's long running series on AIDS Gender and Human Rights. We are
publishing articles daily during the 2014 World AIDS Conference in Melbourne
July 20-25

About the author

Martha Tholanah is
Coordinator for the International
Community of Women Living with HIV (ICW) Zimbabwe, and openly living with HIV.
She also works with Community and Enterprise Development against Stigma (CEDAS)
Trust, supporting children who are vulnerable due to HIV & AIDS.

This article is published under a Creative Commons Attribution-NonCommercial 3.0 licence.
If you have any queries about republishing please contact us.
Please check individual images for licensing details.